Johnan Hadidi, 8, has Legg Calve Perthes syndrome, a rare childhood disease that cuts off blood flow below the hips, causing bone degeneration. Children outgrow the disorder, but require treatment in the interim to avoid permanent disfigurement, the CBC said Monday.
Juvenile orthopedic surgeons at British Columbia Children's Hospital recommended Johnan undergo a surgery to reshape his leg bone, the recovery from which includes spending several weeks in a full body cast. Sima Hadidi, Johnan's mother, said she didn't want her son to go through the recovery and -- against the Canadian doctors' advice -- took him to a Baltimore hospital to undergo a less invasive but still experimental procedure instead.
Hadidi said her son's condition has improved greatly since undergoing the procedure in Baltimore, which included implanting stem cells in his leg joints. Normally the procedure is only done on children 12 and older, the CBC said.
"I spoke to her strongly that this was experimental and that I would not recommend it," B.C. Children's Hospital orthopedic surgeon Dr. Christine Alvarez wrote in Johnan's medical records. "There was nobody here who would recommend it, and certainly would not offer it in this situation."
Since returning to their home outside Vancouver, Hadidi said she hasn't been able to find a doctor willing to care for her son in follow-up visits despite referrals from his family doctor to the surgeon in charge of the orthopedic unit at B.C. Children's Hospital.
Since the story became public, hospital officials told the CBC they would see Johnan and monitor his progress. They said they couldn't find the referral from his family doctor, which is why he was denied an appointment.
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